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Tag Archives: MEN-1

Wendy M., Transsphenoidal Pituitary Surgery, MEN-1

Wendy without Cushing’s

My name is Wendy Moses and I was diagnosed with Cushing’s Disease at the age of 10 in 2009. I had been dealing with weight gain, growth suppression, headaches, muscle weakness, and insomnia since 2007. A couple of nurses at our church said the weight gain would be solved with a growth spurt and we should just wait for that. However, a few months turned into a year which turned into two years and there was still no growth spurt, so we made an appointment with a doctor. 

I was diagnosed after only one appointment at my general practitioner’s office. An adenoma was found on my pituitary and I had surgery to remove it in August of 2009. However, that did nothing to stop the Cushing’s. Suddenly I went from having a rare disease to being the patient that nobody knew what to do with. I was referred to the National Institutes of Health and after just one visit a tumor was found on my pancreas. After measuring hormone levels and looking at multiple scans the doctors were sure that the tumor was the cause of my Cushing’s. I had a distal pancreatectomy in March of 2010, removing the tumor and about a third of my pancreas with it. I was so happy to finally be beyond this disease and start my recovery.

Wendy with Cushing’s

All that came crashing down when a nurse walked into my room and casually mentioned that “because the surgery didn’t work…” It was like time stopped. Nobody had told me or my parents that the surgery was unsuccessful. That was the single worst day of my life. I don’t remember a whole lot about the next few days. I remember that I cried a lot and ate little (extremely unusual for somebody with Cushing’s). My mom took me on walks outside but I rarely wanted to go. It was as if for a few days the fight had left me and I had to really refocus myself before I came out of that fog.

We found out that during the surgery microscopic baby tumors (tumorlets) were found all throughout my pancreas. I was given maybe a few months to live. I also had multiple complications to deal with, the worst of which was a cyst on my pancreas that caused extreme pain and took three attempts to drain. After more testing it was confirmed that I had a genetic mutation (MEN-1) that caused the cancerous tumors (G-PNETs) that caused the Cushing’s.  Those diagnoses left me with the title “the only one”. I am the first person ever documented to have MEN-1 first show up as G-PNET, which first showed up as Cushing’s. To further complicate things, both my parents underwent genetic testing and neither of them have the genetic abnormality. (MEN-1 – multiple endocrine neoplasia – is a condition that causes many tumors, benign and/or malignant, to appear on more than one gland of the endocrine system.  G-PNETs are malignant gastro-pancreatic neuroendocrine tumors.)

The summer of 2010 was horrifying for me. I was in such a daze from the pain and the medication to control the pain that I barely remember anything about it. The few memories I have are all medical – having three appointments with three different doctors in one day, driving to the ER after experiencing severe abdominal pain, and waking up from the first attempt to drain my cyst. There is one memory I have of 2010 that is good – I was granted a wish by the Make-A-Wish Foundation. This was one of the only things that could get me really happy during those months of pain. After a lot of tests, appointments, failed medications (including a chemotherapy pill), and the prayers of thousands of people, I had a last-minute semi-emergency bilateral adrenalectomy in September of 2010.

In January of 2011 my family and I experienced a magical trip to Disney World. The trip was amazing. I was able to spend a whole week free from anything medical except for a back brace I had to wear due to compression fractures. It was, however, easy to forget that I was wearing the brace when I was seeing my dreams come true before my eyes. I felt great the whole time, almost as if I was in perfectly good health and none of the past four years had happened. My wish trip was truly a turning point in my recovery, and it also sparked an interest in volunteering for Make-A-Wish.  On my 19th birthday, November 4, 2017, I was honored to be a Wish Ambassador at the Wish Ball in Michigan. My only duty was to talk to the other attendees about my wish and how it impacted my life. I was so happy to finally be able to give back to those who had given so much for me. I still volunteer for Make-A-Wish during special events and it is an honor to do so!

Now I am trying to finish recovering from Cushing’s while also battling an incredibly rare cancer caused by a one-in-a-million genetic mutation. This fight includes a surgery in 2013 to remove my spleen, gall bladder, and an inactive adrenal tumor. I have a 13-inch scar from that surgery.  However, I have seen the hand of God in all of this. Being diagnosed after only one appointment was a miracle in itself. Surviving long enough to have the bilateral adrenalectomy was another wonderful miracle. A third incredibly important miracle is that I am truly at peace with all of this. I lost my childhood to multiple diseases, one of which will cause health issues my whole life, yet I know that God knitted me together in my mother’s womb just the way He wanted me, genetic abnormality and all. It is incredibly humbling to be proof that God still performs miracles!

Summer, 2018